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Big decision coming up ...

I just received my latest PCR result - and my two year - now 2.5 year trend continues .... "undetected".

I am thinking seriously of stopping my 20 mg daily dasatinib and test remission durability. I meet Dr. Cortes' replacement in two weeks - first time I have met in person in years with an oncologist. Unfortunately, if I stop, I will have to have monthly PCR tests to detect any bcr-abl.

That is my decision - do I want to keep taking a daily drug with six month testing or stop and get tested once a month (which I will hate because of parking and the drive).

What a decision - convenience vs functional cure.

How about waiting a bit?  First, to talk it over with the new guy and to fill him in on ALL your thinking about everything CML - see if he has his own game plan for you to consider.  Plus, as you well know from the data, every year of undetectable is money in the bank vis-a-vis a durable TFR.  You may well have extinguished the original stem cells already, or as your theory posits, your immune system is king of the castle, BUT another year couldn't hurt.  You could take it in 6 month chunks - decide to decide for 6 months at a time.  Anyway, at least see what this guy says.  We'd all like to hear!

That's my plan - to decide after I meet with the new oncologist. I'll keep taking my 20 mg dasatinib until my meeting. I am eager to try, however, as I will have a 50-50 shot given current statistics and my belief I have stacked the deck in my favor (Curcumin, D3, K2, selenium, EPA omega-3, etc.). At least if CML tries to come back with dasatinib gone, nothing happens. Heck - if I had done these things before CML, chances are I would never have developed it in the first place! I tell my children this -so they eat smart and get tested (for vitamin D, etc.) and hopefully avoid their Dad's journey.

I will let everyone know.

Hi Scuba,

I really understand your ambivalence with the choice. For me, it was easier because I had to stop for my lung to recover from pleural effusion. No hesitation right? 

I don’t think that you need pcr every month for ever. This was necessary for the clinical trials when nobody had any ideas of the results. But we learned a lot with all the stop the drug trials. Personally, I followed the recommendations from Dr Rea.

CBC and RT-qPCR monthly during the 1st 6 months, then every 2 months until month 12, then every 3 month during the 2nd year, then every 3 to 6 months.

Next pcr for me, is at the beginning of October,  which is Month 12 !!!!!

Please let us know.....

As you know from my recent post, I too am contemplating the same decision, except I don't have the quite as long on treatment or durable DMR.  In my case, I am also dealing with palpitations that are uncomfortable and at times quite disconcerting.  I have been told that testing is monthly for a year, then every other month for a year then quarterly. I too like not having to be tested more often then every 6 months.

Since you have no apparent side effects issues, I would probably stay on the TKI for a while longer to improve your odds of TFR success.  Or, how about cutting you dose to 10 mg per day and seeing if your PCR holds (this might require more testing for a while as well).  It's a hard decision for me and I'm still trying to make it, but I have a side effect reason and you don't, so harder for you.  Good luck and let us know what you decide.

Hi Scuba,

Congratulations on being more than two years undetected (on low TKI dose)

I'm writing to wish you the best in achieving your TFR goal. You made numerous contributions to the internet and helped many fellow CMLers with advice.

You seem to be in a situation where all roads lead to Rome. Continuing with daily TKI and the 6-month testing will increase your chances of a future TFR attempt. Measuring once a month will allow you to see how your body behaves without TKI. You can also think of other avenues to explore.

Best.